Kites & Puzzles

Even if you don’t have a child diagnosed with autism, you’ve no doubt seen the brightly colored puzzled pieces as magnets on the backs of minivans, charms on bracelets and pictures adorning t-shirts. They all refer to autism as a puzzle piece. But what does THAT mean? I’ve got a kid with autism and I don’t know what that puzzle piece really means, but this morning I had an “aha” kind of moment which is leading me to my own definition.

But first, let’s be sure we’re talking about the same thing. That brightly colored puzzle piece usually has many different primary colors on it: yellow, red, and blue are the main ones I think , or a bunch of different puzzle pieces next to each other. Me, leaning MUCH more toward the literal side of things (gee, Aspie apple fall far from the tree much?) I look at that puzzle piece and think, “What? Is autism something I’m supposed to be figuring out? Am I supposed to try to fit my daughter into a larger puzzle? Is my daughter the puzzle piece with many different colors inside her?” Cuz trust me, trying to figure all that out on a daily basis is a freakin’ mental-suicide-mission (ask me about last Tuesday night and you’ll understand what I mean by that). So I usually just try to think of something else whenever I see that image. Like puppies. Or ice cream. Or family members who tell us we’ve just made up the autism diagnosis to hide behind crappy parenting hanging over a large alligator-filled moat. But I digress.

Switch gears. Hubs is out of town this weekend but last night during one of our steamy, adults-ony texting sessions he told me that there was some kind of kite festival-thingy going on at the park around the corner from his parents’ house. Our daughter had already left the house this morning to go play in the new neighborhood where we’re about to live full time (we’ve been doing home school there during the day since last August), so I drove my son to the park on our way to the new house just to see what was up. Sure enough, there was a BIG party going on at the park, no doubt about it. It had only been underway for a half an hour and already there were throngs of people and it looked like loads of fun including bouncy houses, an aerial gymnastics area, kites, bubbles and balloons. But my immediate thought was not about the fun it would be for the kids, but the overwhelming amount of emotional energy and WORK it would take for me to take them there: I’d have our two kids, plus the neighbor boy no doubt (whenever the 6 year old neighbor boy is staying with his grandma next door, my daughter is GLUED to him like white on rice. He’s a GREAT kid and easy to be around, so that wouldn’t be a problem, but it’s just one more little person to keep track of). So it would be me with one child who refuses to go any faster than a snail’s pace (some of it due to physical limitations, some of it behavior), and then a child who gets SUPER ramped up in crowds and I could just see it instantly become something like this siren song, “Mom, LOOK HERE! Can we get it? Huh, HUH? Can WE???”, “MOM! Look over there! I wanna do that!”, or “Mom, I wanna go in that slingshot NOW!!” And I would have to make a zillion decisions and make sure that she and her little buddy had fun, but try to help keep a lid on things. And in the end, by the time I drove around the park, I just couldn’t muster any energy for it.

Enter guilt. LOTS of it. I used to LOVE to go do things like that. There’s a jazz/arts festival thingy going on in downtown Our Town this weekend too. My hubs and I used to do ALL THAT STUFF all the time. And now it all looks like a major hassle: to keep the kids together, to keep one of them HIGHLY entertained so we didn’t hear five minutes into it, “Is this all there is? I’m bored. Can I go to the car? When are we going to go home? I just wanna be with my cat.” I get exhausted just thinking about it. So we didn’t go. When I turned the corner into the new neighborhood she was ensconced in a street-wide Nerf gun battle. I thought that looked like a much better way for her to spend the rest of the morning, rather than getting over stimulated, over heated and crazed, only to spend the rest of the day coming down off of that artificial high.

Back to the puzzle piece. What does it all mean? As I was driving around the park this morning it occurred to me that at least one piece of the puzzle that is autism is the puzzle piece of self regulations. Chances are if your kids are typical, this phrase isn’t a part of your normal vocabulary. If you have a child with any kind of sensory issues, chances are you’re pretty familiar with the word. Well our daughter daughter doesn’t have much of it. On Easter when our plans with my in-laws were abruptly blown up in our faces (another story for another blog) we ended going to a big recreation area not five minutes from downtown OurTown, chalked full of hiking trails. It was a beautiful late afternoon and we thought it would be nice to take the kids out on some of the easier trails. Uh, we were WRONG. SO WRONG. Our daughter REFUSED to stay on ANY of the trails and was basically running amok. My husband started boiling and I would have too, had not this little phrase popped into my head, “self regulation”. It’s something we’ve been working on in O.T. She’s working on “grading”; moving her body from slow to fast and fast to slow gently and with control. Ya, the big “C” word. She can’t do it. I mean she will, with LOTS of practice, but overall she CAN NOT regulate her body through time and space. NOW I understand why she had such a FIT when she went hiking with our aforementioned neighbor boy and his grandma a few weeks ago. Do you what that nasty neighbor lady did to our sweet baby girl? She had the NERVE to require her to stay on the trail. WHAT was she thinking? Boy was our daughter HOT. I mean FUMING. The rest of the weekend was a nightmare (rages, tantrums, nasty attitude about EVERYthing), all because she was told she had to stay in a confined area out in the wilderness. And there we were weeks later, out on a trail and she was going bonkers because that’s all she CAN do. There is no self regulation to be had. So we can talk about park rules, respecting nature, the importance of not trashing wildlife till we’re blue in the face (or veins are popping out of our foreheads as in my husband’s case), but she just CAN’T do it. Yet. And so YES, all of that looks like HORRIBLE behavior. It IS horrible to see a child our daughter’s age and size running around like a banchi, but that behavior is rooted in a neurological fact that she doesn’t have the self control/regulation. Yet. I see it as my job to keep her out of situations that she can’t developmentally handle. So that’s what this morning’s festivities at the park represented for me: another open arena in which she would fly apart at the seams with only me there, outnumbered three to one. I just couldn’t do it.

So then I felt bad some more because I wasn’t Mom Of The Year offering to take her, her brother and the wonderful neighbor boy for a morning of fun in the sun at the park. And then I looked again at the gaggle of neighbor kids hiding behind trees and bushes trying to ambush each other with foam darts and I told myself this was probably a more authentic form of fun than any “festival” could provide.

What about you? What’s your puzzle piece? Have you identified it yet? And then what do you do when you do figure out what “it” is?